Creutzfeldt-Jakob-Disease (CJD) is a rapidly progressing fatal disease. Most patients will not know the diagnosis, they leave reality in an early stage and go into dementia. The most afflicted persons are their relatives. They are forced to observe the patients' physical and mental decline. In this survey we included all cases of CJD who were registered in Germany within seven months. Questionnaires were sent to the closest relatives (n = 58). The response rate (n = 42) was acceptable. There was a high prevalence of abnormal anxiety and depression scores and bad quality of life. One fourth (n = 10) took part in a self-help meeting in Göttingen. Six months later, a follow-up assessment showed that relatives, who had participated in the self-help meeting, had significantly (p < 0,05) improved quality of life although their high levels of anxiety and depression persisted. The non-participants had no changes of depression or quality of life, but slightly improved anxiety. The severe psychological burden of these relatives could be a reaction to the physical and mental fall of the CJD-patient. It is higher that that of relatives of patients with different diseases in the literature. Special support for this group of relatives seems necessary.

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